complex home care part ii family annual income, insurance premium, and out-of-pocket expenses

8/10/2019 Complex Home Care Part II Family Annual Income, Insurance Premium, And Out-Of-Pocket Expenses

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THE OUT-OF-POCKET HEALTH

care costs paid by familiesmanaging complex tech-nology-based home health

care are often absent or under-reported (Clabaugh & Ward, 2008;Stanton & Rutherford, 2005) andhave yet to be systematically tabu-lated or estimated (NationalAssociation for Home Care andHospice, 2008). Annual costs paid

by families for intravenous infu-sion of home parenteral nutrition(HPN) health insurance premi-ums, deductibles, co-payments forhealth services, and the widerange of out-of-pocket homehealth care expenses are present-ed. Subsequently, the economicimpact of these non-reimbursedexpenses on family quality of life

and patients clinical outcomes areanalyzed.

Background

The definition of out-of-pock-et costs varies and may includeany one or a combination ofexpenditures paid by families forinsurance premiums, deductibles,co-payments for health services,or items not covered by insurance

such as home health personnelneeded to assist with patient careand home care supplies, trans-portation, and costs to obtain serv-ices (Hwang, Weller, Ireys, &Anderson, 2001; Naessens et al.,2008).

For this study, out-of-pocketcosts were defined as medicallyrelated expenses for HPN care and

EXECUTIVESUMMARYAnnual costs paid by familiesfor intravenous infusion ofhome parenteral nutrition(HPN) health insurance premi-ums, deductibles, co-paymentsfor health services, and thewide range of out-of-pockethome health care expenses aresignificant.

The costs of managing com-plex chronic care at home can-not be completely understooduntil all out-of-pocket costshave been defined, described,and tabulated.

Non-reimbursed and out-of-pocket costs paid by familiesover years for complex chroniccare negatively impact thefinancial stability of families.

National health care reformmust take into account thelong-term financial burdens of

families caring for those withcomplex home care.

Any changes that may increasethe out-of-pocket costs orhealth insurance costs to thesefamilies can also have a nega-tive long-term impact on societywhen greater numbers ofpatients declare bankruptcy orqualify for medical disability.

Carol E. SmithFaye Clements

Arthur R. Williams

Complex Home Care: Part II FamilyAnnual Income, Insurance Premium,

And Out-of-Pocket Expenses

UBOLRAT PIAMJARIYAKUL, PhD, RN, isa Research Assistant Professor, Universityof Kansas School of Nursing, School ofNursing Building, Kansas City, KS.

DONNA MACAN YADRICH, BS, MPA,CCRP, is a Project Coordinator, Universityof Kansas School of Nursing, Kansas City,KS.

VICKI M. ROSS, PhD, RN, is a ResearchAssistant Professor, University of KansasSchool of Nursing, Kansas City, KS.

CAROL E. SMITH, PhD, RN, is a Professor,School of Nursing and PreventiveMedicine Department, University ofKansas, Kansas City, KS.

FAYE CLEMENTS, RNC, BS, is a ResearchNurse, University of Kansas School ofNursing, Kansas City, KS.

ARTHUR R. WILLIAMS, PhD, MA (Econ),MPA, is Director, Center for HealthOutcomes and Health Services Research,Childrens Mercy Hospitals and Clinics,and Professor, College of MedicineUniversity of Missouri Kansas City,Kansas City, MO.

NOTE: Please see following page for addi-tional information, including grant disclo-sures and author acknowledgments.

Ubolrat PiamjariyakulDonna Macan Yadrich

Vicki M. Ross


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services not reimbursed by insur-ance. Insurance premiums weredefined as the premiums familiespaid annually for the HPNpatients health insurance. Thisaverage does not include any pre-mium portion paid by employersor government payers. Thedeductible costs were defined asthe amount paid each year for var-ious patient services before insur-ance coverage of these expenses

begins (Mosby, 2008). Co-pay-ments were defined as the fixedamount paid at the time of receiv-ing health services, often $10-$50for each doctors appointment or$500 for emergency room visits.

Most plans require co-pay-ments for annual physicals andother specifically identified healthservices (Lightbulb Press, 2008).Deductible payments for emer-gency room and other out-of-pock-et costs were tabulated on anannual basis. Premiums, deducti-

bles, and co-payments for physi-cians and prescriptions werereported by patients on a monthly

basis. The use of these clear andcomprehensive definitions for

what constitutes out-of-pocketcosts enhances the clarity of datacollected in this study (HealthInsurance Information, 2009).

Study Design and MethodsData were collected for this

institutional review board ap-proved study from patients whoprovided signed consent forms toparticipate. The 80 families wererecruited through home care infu-sion agencies and the OleyFoundation, a 501(c)(3) non-profitorganization for families manag-ing HPN. Data collection methodsincluded the completion of ahealth services/out-of-pocket ex-

pense questionnaire and semi-structured interview questionsabout health insurance coverage.This use of prospective expensequestionnaires for collecting thewide range of out-of-pocketexpenses has been validated inseveral studies (Goossens, Rutten-van Mlken, Vlaeyen, & van derLinden, 2000; Hoogendoorn, vanWetering, Schols, & Rutten-vanMlken, 2009; Ritter et al., 2001;Saba & Arnold, 2004; Stark, Knig,

& Leidl, 2006), including thenational survey by the U.S.Medical Expenditure Panel Surveycollected across decades by theAgency for Healthcare Researchand Quality (AHRQ, 2009a;Cohen, Howard, & Smith, 2003).

Family income adequacy wasalso measured using the Family Eco-nomic Stability Survey (Fillenbaum& Smyer, 1981). Using this incomeadequacy survey, patients ratedtheir ability to pay monthly bills

as cant make ends meet, havejust enough no more, have a lit-tle extra sometimes, or alwayshave money left over. As in otherstudies these survey results werefound reliable with rating ofpatients and caregivers living inthe same household highly corre-lated (Smith, 1999; Smith et al., 2003;Smith, Fernengel, Werkowitch, &Holcroft, 1992). In prior studies,health care economists havejudged the Family EconomicStability Survey to be valid and

reliable for obtaining informationon health services use and familyincome adequacy (R.E. Lee, per-sonal communication, 2002;Smith, Kleinbeck, Fernengel, &Mayer, 1997; Spaniol, 2002; A.Williams, personal communica-tion, 2008).

Sample

The sample for this studyincluded patients requiring life-long HPN for nonmalignant boweldiseases and their family care-givers, mean age 50 years and 49years respectively. One-third (33%)of the patients and 42% of the care-givers were male. All patients

selected White as their race exceptone African-American. Caucasiansare disproportionately affected byCrohns disease resulting in 97% ofHPN (Crohns/Colitis Foundation,20xx). The caregivers were 89.7%(n=70) White, 5.1% (n=4)Hispanic, one caregiver wasAmerican Indian/ Alaskan Native,and one Asian while two reportedtheir race as other. Patients inthis sample had required lifesavingHPN care for an average of 8 years

(SD=8 years). The majority of sub-jects (88%) had some college edu-cation.

Results

Family income adequacy. Fifty-five percent of survey respondentswere on medical disability, while27% of patients and 68% care-givers were employed. Also, 12%of patients and 16% of caregiverswere retired. Patients reportedannual family income ranging from

$10,000 to $100,000 per year withthe median between $20,000 and$30,000 per year. One patientreported family income for the yearas $3,000. There was consensus onfamily income data reported bypatients and their caregiver. Therewere 12 families with more thanone caregiver and each of these sec-ondary caregivers was either notemployed or did not contribute tofamily income. And there was nosignificant difference in these 12caregiver pairs on their income

ACKNOWLEDGMENTS: The authorsextend their appreciation to all familieswho shared their detailed informationand to the research staff involved in thisstudy. We also want to thank TheresaDavis for her skilled preparation of thesemanuscripts.

GRANT DISCLOSURE: This project waspart of a larger study supported byNational Institute of Nursing Research(NINR) Grant # R01 NR009078. The con-tent is solely the responsibility of theauthors and does not necessarily repre-sent the official views of the NINR or theNational Institutes of Health.

NOTES: The first article in this series,Complex Home Care: Part I Utilizationand Costs to Families for Health CareServices Each Year, appeared in NursingEconomic$, July/August 2010 (Vol. 28,No. 4, pp. 255-263).

Part III, which will appear in theNovember/December 2010 issue ofNursing Economic$, will address the eco-nomic impact on family caregiver qualityof life and patients clinical outcomes.


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adequacy ratings. When patientswere asked to rate the adequacy offamily income compared to payingmonthly expenses, 29.6% reportedhaving just enough money to paymonthly bills and no more,while 43% reported havingenough, with a little extra some-times. On the extremes of this rat-ing scale, 11.3% reported theycant make ends meet, whileonly 16.2% always have money

left over.Table 1 shows a comparison offamily income adequacy ratingsfrom this current sample ofpatients with income adequacyratings obtained from a sample ofHPN patients in an earlier study(Smith et al., 2002). As shown inthe right hand column, since 2002there has been a 4.9% increase inthe proportion of patients statingthey cant make ends meet, a7% increase in those who havejust enough money to pay bills,and no more, and 21.5% fewerwho have a little extra some-times. In this current sample,however, the percentage reportingthey always have money leftover after paying monthly billswas 9.7% greater than in the 2002HPN sample. Patients and care-givers in this study reported theneed to keep a job to maintainhealth insurance coverage.

Health insurance coverageexpenses paid by families. Eighty

families reported on the types ofinsurance they had for HPN cover-age. One patient was uninsured.HPN families reported a widerange of medical insurers and anassortment of plans offered by thesame insurer. Overall, 55% ofthese 80 families had privateinsurance with 67% having morethan one health insurance policy.Over a third (37%) had Medicareinsurance.

Only 12 families were awareof the individual lifetime maxi-mum benefit limit of their insur-ance policy. Three families report-ed no restriction on the lifetimemaximum amount that would becovered by their insurance plan.Those few subjects who knewtheir lifetime maximum coverageallowed reported a range of $1million to $5 million.

Subsequently, 30 families com-pleted the expanded health insur-ance premium costs questionnairethat detailed information about theamounts spent for patients insur-ance, premiums, co-payments,deductibles, and out-of-pocketHPN health care expenses. Thoughall reported their current healthinsurance plans covered someHPN-related expenses, 20% ratedtheir health insurance coverage asinadequate for HPN costs, and23% rated their coverage for otherfamily members as inadequate.

Health insurance premiums

data. The monthly range, mid-point, and estimated annual out-of-pocket costs including premi-ums, deductibles, co-payments,and other out-of-pocket expensesare shown in Table 2. Twenty-fivefamilies reported health insurancepremium costs ranged from $100to $1,700 per month (midpoint$350 per month or $4,200 annual-ly). Six families paid no medicalinsurance premiums as the

patients were covered by a statehigh-risk plan. One patient metlow income criteria for Medicaid,and one familys employer paidtheir premium. Medical equip-ment (HPN intravenous pumpsand syringes) was generallyincluded within the medicalinsurance plan.

Additional premiums for pre-scription coverage, ranging from$10 to $87 each month (median$46), were paid by six families.One family had a medical assis-tance supplemental plan that paidfor their annual prescription drugpremium. Thus, the overall aver-age out-of-pocket annual cost forhealth insurance premiums was$4,200. With additional enroll-ment in a separate prescriptionplan, the annual average insurancepremiums could rise to $4,752.

Deductibles cost data. Twotypes of deductibles were reported

by families: (a) an annual amountfor all services covered under the

Table 1.Family Monthly Income Adequacy Ratings by HPN Patients in a 2002 Sample and the Current Sample

Monthly Income-to-

Expense Ratings byPatients of theFamily Income1

2002 HPN Sample(N=85)

Current HPN Sample(N=80)

Percentage and Direction

of Changes between2002 and CurrentSample Ratings

Cant make ends meet 6.4% 11.35% Increase of 4.9%

Just enough, no more 22.6% 29.6% Increase of 7.0%

Have a little extra sometimes 64.5% 43.0% Decrease of 21.5%**

Always have money left over 6.5% 16.2% Increase of 9.7%*

*p< 0.05 ** p< 0.011Using this survey, patients rated their ability to pay monthly bills as cant make ends meet, have just enough to pay bills, nomore, have a little extra sometimes, or always have money left over.


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insurance plan, and (b) additionaldeductible amounts to be paid forspecific health services such asemergency room visits or outpatientsurgery admissions. Deductibleamounts for the same service often

differed among families. If familiesused providers in the insurancecompanys network, the amount ofthe deductible was reported to beless than if they used the services ofout-of-network providers.

Fourteen of the 30 familiesreported annual out-of-pockethealth insurance plan deductibles(in-network). Five families did nothave any out-of-pocket deductiblecosts that year, and three reportedtheir deductibles were paid bytheir state high-risk insurance

pool. Ten patients listed theamount of the medical plandeductibles as ranging from$1,000 to $3,000 (mode $3,000).

Among these families, theannual deductible for in-network

health care services was $1,500,whereas non-network servicesrequired a $3,000 deductible to bemet before insurance benefitswould be applied. Deductiblerates for emergency room visitswere reported by three families.Two were expected to pay a $50deductible, and the third familywould expect to pay a $500deductible for each emergencyroom visit.

Co-payments cost data. Mosthealth plans also required the

insured to share the costs of healthservices in the form of co-pay-ments. These co-payments wereoften due at the time of service.Twenty of the families providedinformation regarding the HPN

consumers co-payments, and 10of those reported the amountcharged varied based on the spe-cific health service utilized. Thesecharges might be fixed amounts ora percentage of the allowed charge(with 20% the most frequentlyreported). Whether based upon afixed amount or a percentage, themost common co-payment for aphysician appointment rangedfrom $10 to $40. Twenty-sevenpercent of these patients had pub-lic insurance only; they reported

1 Provider visits for HPN only, not the underlying or concomitant medical conditions; also excludes laboratory/radiologycharges. These co-payments for physician visits were similar for private ($10-50) or public insurance ($25-$40).

2 Prescription costs other than infusion pharmacy costs. Because these bowel disorder patients cannot absorb oral medica-tions, they have few pharmacy medication bills.

3 Not all families reported child care costs.4 Total does not include cost of a supplemental prescription or health insurance plan premium, or if any hospital admission out-

of-pocket costs which can be up to $12,000, for an intravenous line infection hospitalization total charge of $60,000.

Table 2.Monthly Midpoint and Annual Estimated Out-of-Pocket Expenses Related to HPN

Reported Family Expenditure for the HPN Patient

Monthly Rangeof Expenses

Reported

Monthly Midpoint

of Expenses

Annual EstimatedOut-of-Pocket

Expenses

Insurance PremiumsMedical PrescriptionSupplemental prescription

$100 - $1,700$10 - $87

$350$46

$4,200$552

Insurance deductible for various health services 0 - $3,000 $250 $3,000

Co-Payments/Co-InsurancePhysician visits1

Prescriptions related to HPN2

Emergency room visits

$10 - $400 - $100

Not applicable

$25$6.4

Not applicable

$300$77

$250

Other Out-of-Pocket CostsOTC medications

OTC suppliesEquipmentFurniture to store HPN suppliesLong distance telephoneHousekeepingTravel for medical careHome care assistanceFamily members HPN medical education conferenceChild care during HPN services3

$240

$60$279$490$360

$1,616$570$900

$1,581$4,000

Total Annually $17,9234


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MD office co-payments rangingfrom $25 to $40 while patientswith private insurance only hadoffice visit co-payments between$10 to $50.

Deductibles for emergencyroom and other out-of-pocketcosts were estimated on an annual

basis and incurred at time of uti-lization. Deductibles and co-pay-ments for physicians and pre-scriptions were collected monthly.Four families did not pay any co-payments. For three families, co-payments were paid by the statehigh-risk insurance pools, and thefourth familys insurer paid 100%of medical costs after the $3,000

deductible was paid by the family.Nineteen families also report-

ed rates for prescription drug co-payments. Eleven of the 19 fami-lies reported charges based on atiered prescription payment sys-tem with smaller co-payments forgeneric and formulary drugs andlarger co-payments for non-formu-lary or brand-name prescriptions.The most common co-payment forgeneric drug prescriptions was20% of the cost, reported as rang-

ing from $2.25 to $20 (mode $20).Also reported were high co-pay-ments of up to 50% (a four-foldincrease) for non-formulary drugswith those costs ranging from$5.60 to $100 (median $39). Mailorder prescriptions had a differentset of co-payments. Two familiespaid fixed rates for all drugs, onefamily paid $5.00 per prescrip-tion, and the other paid $1.00 foreach drug. For these families theannual average co-payments for

physician visits were $300 and forprescriptions were $77.Other out-of-pocket health

expenses related to HPN. All fam-ilies reported out-of-pocket HPN-related expenses covered by insur-ance. These costs were for over-the-counter (OTC) medications,supplies, furniture/transport de-vices, travel, long distance tele-phone costs for health services,child care, housekeeping, andhome care assistance. Familiesreported spending 0 to $200 a

month (median = $240 per year)on OTC medications, and 0 to$125 per month (median = $60 peryear) on OTC supplies. The mid-point out-of-pocket expense foritems such as furniture to organizeHPN supplies and/or wheelchairswas $490 per year.

Five of these families had chil-dren under 18 in the householdindicating legal and financialresponsibilities. However, therewas no significant difference

between the ratings of familyincome adequacy for families withor without children (2=2.54,

p=0.469). Other out-of-pocketexpenses reported by these fami-

lies included a median of $279 forequipment (e.g., bags, pump, etc.)and $360 per year for long distancetelephone calls to their health careproviders. Eleven families requiredhousekeeping assistance, and themedian costs were $1,616 per year.The median travel cost for gas andhighway tolls for HPN clinic visitswas $570, while $900 per year wasspent for home care assistance. Tenfamilies reported they attended theOley Foundation or a similar HPN

education conference. The report-ed conference costs ranged from$479 to $3,500 (median = $1,581per year). The median for childcare expenses was $4,000 per year(n=5).

Twenty-three percent of thesefamilies reported some or all oftheir OTC medication and supplycosts were tax deductible or metcriteria for reimbursement fromtheir Flexible Spending or HealthSaving Accounts. Only 17 of these

families had Flexible SpendingAccounts, and 11% had HealthSaving Accounts. The remainderof the families either did not knowor were not eligible for such taxsavings plans that could coversome of their out-of-pocket healthcare expenses.

Summary of all out-of-pocketexpenses. These families reporteda variety of insurance types andpremium costs and a wide rangeof out-of-pocket amounts paid forHPN-related care. The median in

these out-of-pocket expenditurecategories was used to estimatethe average spent per year.Overall, the out-of-pocket expens-es for health insurance premiumscould be as high as $4,752 if thefamily required a supplementalprescription plan. Based on datafrom this sample, HPN patientspay an average of $3,627 per yearout-of-pocket for co-payments anddeductibles and up to $10,096 peryear for expenses such as long dis-tance phone calls, home careassistance, child care, housekeep-ing services, and travel costs formedical services or for attending amedical education conference.

Co-payments for emergency roomvisits and other out-of-pocketcosts were estimated on an annual

basis. Premiums, deductibles, andco-payments for physicians visitsand prescriptions were reportedon a monthly basis (see Table 2).

Discussion

Data from this study suggestcosts to families for annual healthinsurance premiums and otherHPN-related out-of-pocket expens-

es are substantial and widely vari-able. All totaled, the HPN familiespay an average of $17,923 per yearout-of-pocket for HPN. In addi-tion, as found in Part I(Piamjariyakul et al., 2010), thesefamilies average non-reimbursed

billing costs (typically 20% ofcharges) for health service use andone yearly hospitalization was$12,943. Thus, HPN families totalannual average out-of-pocket plusnon-reimbursed costs of $30,866

is startling when compared to theaverage annual U.S. householdincome in 2007 of $50,233 (U.S.Census Bureau, 2008). Potentiallyhalf of the annual family incomemay be required for out-of-pocketcosts related to HPN.

Further, a German study ofcosts related to inflammatory

bowel disease (the most commonreason for HPN) found over half ofthe non-reimbursed health carecosts were attributed by familiesto loss of work time and necessary


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early retirement (Stark et al.,2006). A study limitation isthat it did not address worktime loss or career delays

because of HPN. For HPNpatients and caregivers whoare in the prime of theirworking careers, with chil-dren and mortgages, the financialimpact of missing work or oppor-tunities for promotion could bedramatic with a lifelong effect.

In the United States, out-of-pocket costs for OTC supplies,travel for health services, and longdistance phone calls to profession-als are not typically included inthird-party payers cost of care. In

France, where specialty centersmanage HPN, these out-of-pocketcosts to families are reimbursedfor travel expenses and home careservices (Tu Duy Khiem-ElAatmani et al., 2006).

As in other chronic home carestudies, annual out-of-pocketexpenditures of families in thissample varied from none to thou-sands of dollars per year (Bernard,2007). Deductibles and co-pay-ment amounts varied even within

the same insurance companydepending on the type of plan thepatient qualified for and costswere reported to continue toincrease annually. In 2008, theaverage employee paid $3,394 tocover their familys medical insur-ance premium while our datarevealed HPN families pay $4,200out-of-pocket (AHRQ 2009b). Insome instances, HPN patients whomet criteria for publicly fundedstate high-risk insurance pools

reported paying little or no out-of-pocket costs, but worried coveragewas being depleted statewide(Zerzan, Edlund, Krois, & Smith,2007). The National Coalition onHealth Care (2008) reported work-ers paid 12% more for employer-sponsored health insurance pre-miums in 2008 than they did in2007. It is notable 77.9% of thosefiling for medically related bank-ruptcy already had health insur-ance (Himmelstein, Thorne,Warren, & Woolhander, 2009).

This high rate of medically relatedbankruptcies aligns with our datarevealing each family has largeannual out-of-pocket expenses,costly health insurance premi-ums, deductibles, co-payments,and supply or equipment bills topay (Zerzan et al., 2007).

Compared to data from a pre-vious national HPN population,

the proportion of patients in thiscurrent sample who qualified formedical disability benefitsincreased from 40% to 55%.Comparisons in Table 1 betweenthis sample and another HPN pop-ulation collected in 2002 (Smith,2002) revealed 5% to 7% morepatients in the current samplerated their family income as cantmake ends meet and reportedthey have just enough but nomore after paying bills. Also,

these income adequacy ratingsfound a significant 21% decreasein families having only a littleextra money left over after payingtheir monthly bills. In contrast, inthis current study there was anincrease of almost 10% of familiesreporting always have money leftover compared to the 2002 HPNsample. The increased percent-ages of those reporting alwayshaving money left over and thosehaving less than enough money inthis sample is not explained bythe known association betweenhigher incomes and increasing age(Swartz, 2006). However, thesedata may align with the pastdecade in the U.S. economy wherethe poor become poorer andthose at higher income levelsgained more disposable income(Organisation for Economic Co-operation and Development [OECD],2008). Yet the unreimbursed andout-of-pocket expenses familiespaid for HPN care were reported

to rapidly deplete family sav-ings.

Implications and Conclusions

At the time of this study,families in the United Stateswith chronic illnesses werereported to pay more than

10% of their income for out-of-pocket expenses for their healthservices (Bernard, 2007). Yet, ourinterview data confirmed thateven with insurance coverage(often with multiple plans and/ordisability coverage) HPN familiesreport expensive insurance premi-ums, co-payments, deductibles,and numerous other out-of-pocket

costs which can easily exceed10% of their income. While thesefamilies were thankful for havinginsurance, several also noted thefinancial burden that results fromincreasing premiums and de-ductibles and the co-payments forhealth care professional services.

The costs of managing com-plex chronic care at home cannot

be completely understood until allout-of-pocket costs have beendefined, described, and tabulated.

Non-reimbursed and out-of-pock-et costs paid by families over yearsfor complex chronic care negative-ly impact the financial stability offamilies. A flexible health carespending account could helppatients and families with thesecosts (Vaughan, 2009). We strong-ly recommend all future economicimpact studies include data col-lection on out-of-pocket costs.

These data indicated nationalhealth care reform must take into

account the long-term financialburdens of families caring forthose with complex home care.Any changes that may increase theout-of-pocket costs or healthinsurance costs to these familiescan also have a negative long-termimpact on society when greaternumbers of patients declare bank-ruptcy or qualify for medical dis-ability. Advocacy for these fami-lies by the Oley Foundation,health professional groups, andthird-party payers include design-

The costs of managingcomplex chronic care athome cannot be completelyunderstood until all out-of-pocket costs have beendefined, described, andtabulated.


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ing approaches that help reducenon-reimbursed expenses. $

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ADDITIONAL READING

Mollica, R.L., Kassner, E., Walker, L., &Houser, A.N. (2009). Taking the longview: Investing in Medicaid homeand community-based services iscost-effective. Research Report, 1-8.Retrieved from http://www.aarp.org/research/assistance/medicaid/i26_hcbs.html


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